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Not coping well

Jess33Jess33 Member Posts: 10
Hi, I’m new to this. I have been getting fairly regular mammograms ect for years now due to strong family history of breast cancer. I’m 45 and have always looked after myself physically very well. No one aside from me had any issues until they were in their 50’s or 60’s. Aside from my great grandmother no one has had a mastectomy. So after postponing my mammogram for a year due to Covid I decided I needed to get it done before starting a new job. About a week after re entering the workforce I was told there was a problem. It took 2 biopsies and about 6 weeks before they confirmed DCIS medium grade (still don’t know what that means) and I was advised of my options. The options all seemed pretty awful but a double mastectomy with reconstruction (implants as I was told I’m too thin for flaps), seemed like the safest option but I’m ashamed to say it was also very high on my priority list that I’d look ok after. What irony!!! I’ve had three operations in ten days due to complications. I’m left without implants and due to skin necrosis I’ve lost one nipple and about a third of the skin on both flaps. I’ve just seen a second surgeon for a second opinion and it appears this could and probably should have all been avoided (I believe she said “what’s this?” When she saw the mess I’ve been left with) I had to explain why my skin was so damaged. I can’t have any reconstruction until possibly mid next year maybe later as I’ll lose my job if I have any more time off. I know I should be grateful to be alive, ( the surgeon kept telling me I’d dodged a bullet) but I feel devastated, broken and completely unattractive. My relationship with my partner is at best under enormous strain. Can anyone tell me how they got through losing their breasts and feeling incomplete? I feel ashamed even whinging here about this as I know it could have been so much worse. And yet I’m not ok at all and having a very hard time seeing any light at the end of this. 

Comments

  • June1952June1952 Regional VictoriaMember Posts: 1,288
    Oh, @Jess33, welcome to the club none of us wanted to join or thought we'd ever have to join.
    You have been through a lot already and we all know how you are feeling let down by the medical profession and by life itself.
    I will send you a private message - check the top where you have to sign off as you will see a message appear.
    You are in my thoughts.  💖💖
  • Julez1958Julez1958 SydneyMember Posts: 186
    Hi there
    there is a private group here called “ Choosing Breast Construction “ you can join and also a separate website called “ Reclaim your Curves” about reconstruction that you might find useful.
    Getting a second opinion seems sensible in the circumstances.
    One of the posts at the top of the page you will see there is a book by an ex breast cancer surgeon who got breast cancer at 40 I found it very helpful - she also had a blog.
    She was too thin for the surgery using her own tissue and had issues with her implant.She didn’t realise how much she didn’t know about the breast cancer experience until she be done a patient.
    Its certainly normal to feel emotional and vulnerable about all this as our breasts are part of our womanhood.
    And it’s perfectly normal to grieve about the loss of our “ bullet proof” former self.
    Some ladies find seeing a counsellor or psychologist helps, I saw one  for  a couple of sessions and the best advice she gave me was it’s ok to cry as it’s cathartic.
    I have just passed one year since my diagnosis - stage 2 lobular cancer not picked up on mammogram , requiring mastectomy and I decided to get the other one done as well with delayed DIEP tissue reconstruction.
    I am in a much better place mentally now than I was 12 or even 6 months ago but still have a random cry , usually when my husband is asleep.
    My heart goes out to you and there are many ladies on here who will give you advice and support.
    Take care.

  • jennyssjennyss Western NSWMember Posts: 1,285
    Dear @Jess33,

    from jennyss in Western NSW
  • arpiearpie Mid North Coast, NSWMember Posts: 5,556
    Sorry to see you here, @Jess33 - you've definitely had a hard time of it. :(   All your emotions are real and validated ... don't beat yourself up xx 

    Some great advice above, from @Julez1958 - and don't let this despair get on top of you ... ask your GP for a referral to see a counsellor or psych - or even the social worker at the hospital you attended ....they will be able to give you methods of de-escalating the despair & even ways of preventing/controlling it.  Keeping busy & getting back to your routine/hobbies is a good start.

    You can also Call the Helpline above 1800500258 and have a chat .... 

    Whereabouts are you? Pop your town/area into your profile and other members nearby may be able to help you with support and services in your area.

    Check this post out re 'stuff' on the forum here ....... 
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest 

    take care, continue recovering, and there are NO silly questions - ask away anything!

      


  • ZoffielZoffiel Regional VictoriaMember Posts: 3,250
    edited September 7
    Hey @Jess33 I'm never sure if my bluntness is OK or not (apologies if it is not)

    We are more than the sum of our parts.

    I was first diagnosed when I was 43. Bit like you, there was some family history so getting the news was a shock, but not such a surprise. We will leave my recurrence for a different conversation

    My initial recon after a double mastectomy and expanders/implants was a complete shitfight--different from yours but still a disaster. Everything that could go wrong did, and I didn't end up with anything that looked the pictures in the brochure. I wish I'd bailed on the whole concept of trying to look normal, but I didn't. I can't count how many surgeries I've had over the last 16 years. 

    Getting on the trolley and agreeing to have your breasts removed is a very difficult thing to get your head around. Finding the promised replacements are faulty and not fit for purpose just sucks. There are a few of us who have been there.

    Again, you are more that the sum of your parts. Or non parts as the case may be. If your partner is struggling because you don't look like you used to, that's not something you can control. You have lost the element of choice, anyone who values you will recognise this. Mxx
  • Cath62Cath62 Brisbane Member Posts: 499
    Hi @Jess33 just wanted to send you a very big hug 🌻. 
  • Jess33Jess33 Member Posts: 10
    Thank you so much for all your kind words, information and even the bluntness. All helpful and welcome. I was so busy with my job and my daughter turning 7 a few days before my op that I didn’t have time to think much about it let alone do any research. I blindly trusted my surgeons. I’m regretting it all now and feel if I’d had the time (I was given 6 weeks from diagnosis to surgery) I would have chosen differently but I was told I would look better… yea that’s what the surgeon said… and although I wasn’t too thrilled with the idea of fake breasts the idea of going slightly bigger made me feel like I could live with and maybe even embrace the new me. What I’ve been left with is shocking and I had no idea this was even possible. I’m really hoping I find someone else here who’s had something similar happen and can reassure me I will eventually look ok. Currently I cry every time I see it so I’m not doing the three massages a day..  starting to dread showers and feel physically ill when I see my chest. I’m seeing a third  surgeon late October and and  hoping for some good news…
  • arpiearpie Mid North Coast, NSWMember Posts: 5,556
    edited September 25
    I hope you have more luck in Oct with the 3rd surgeon, @Jess33.  Maybe try & look at the scars more as 'battle scars' - and YOU WON!  Those puppies weren't doing you any favours (matter of fact, tried to kill you!) & you kick booted them out of your body ...... 

    I only had a small procedure compared to you - but now have a dent where the 'recon' slumped a bit afterwards - I was very lucky that all my cutting was just around the nipple (which was removed, the surgery done under the skin & the nipple sewn back on) so I don't notice THOSE scars as much as I do the dent, as they've blended in well with my areola .... my surgeon offered to 'fill it' with another procedure but I said I'd live with it .... 

    All the best, take care xx
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